Scared of scans - extreme claustrophobia
Comments
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I am EXTREMELY claustrophobic!! I can't even sleep in a sleeping bag and I am getting sweaty palms just thinking about the MRI machine. I took Ativan with my first MRI but it didn't kick in before the test. I lasted 5 minutes. The 2nd MRI was done at the hospital with an IV of Versed. That is the only way I will ever attempt it again. The MRI took an hour and there's no way I would have made it otherwise.
My doctor wanted me to have a PET scan and said it is much more open than the MRI so she didn't think it would be a problem. But when I showed up for the scan the PET equipment was in a mobile imaging center which are quite cramped. I've had issues with claustrophobia in those before. Thought I could do it and got the radioactive injection but started getting claustrophobic while waiting for the stuff to go through me before the scan. The waiting area was very small and they wanted me to pull a curtain around me. I couldn't close the curtain. Once they laid me on the table I knew I couldn't do it and it was all I could do to not run. I am rescheduling and getting a prescription for something to calm me down. Hopefully they can give me a pill (many pills!) to get me throught this. I'm not sure what part of claustrophobic my doctor doesn't understand!
I feel like a fool. This is the 2nd test I've started and not been able to complete because of my claustrophobia. I know I need the PET scan. I went in because of pain and numbness in my arm and hand. The MRI showed a bone cyst in my humerus bone. The onc was like "Well, the bone cyst is no big deal but for some reason they want to do a PET scan so let's set it up." When I filled out the paperwork before the scan, the clinic sticker at the bottom said tumor scan. No one said anything about a tumor!! Then after I freaked out and said I couldn't do the scan the guy doing the scan was trying to talk me into trying and said this is a very important test for you to have. So now I'm worried that something is going on that they won't tell me about yet. Just finished chemo in Jan. and had my replacement surgery Mar. 31. Could I already have mets?
I'm trying to stay calm until the scan is done and I have results, but I'm sure you all know how hard that is. Thanks for letting me get this off my chest.
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I understand about the MRI claustrophobia. I never thought I would have any trouble, but I did. I managed to get through it with a LOT of self control and mind games, but barely. If the only way to get through it is with meds, then that is what you have to do. If I have to do it again, I will definitely request meds.
Is there any way you can go to a different imaging center for the PET scan? A different place might very well have a more spacious setting. I had a room to myself to sit quietly while the contrast went through my body. The PET scanner was in a large, well lit room, and was more open than the MRI, so I did not have any claustrophobia with it.
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I don't know if my insurance will cover it if I go somewhere else, but it's sure worth a try. I'm sure I'll need to do this more than once before this cancer saga is over, so I need to find a way to do it. I know if I had waited in a bigger room and the scan was done in the clinic rather than a truck that I would have had a better chance of getting through it.
I will definitely try to get my onc to understand that there will be no scans without something to calm me. I can't go through this again.
Thanks for your help!
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Do check with your insurer, but it might even be worth a drive to a nearby county to another facility. For my PET scans, it was automatic that they gave me something (I think it was Valium) because they want you very calm, so they told me I would not be able to drive home. But if I had to do the MRI again, I think I'd double the dose!
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Pam,
I am only a little bit claustrophobic, but i have had some trouble with being in the MRI machine with my head all the way in for a shoulder scan, and even for a knee scan with my head out but with my arms in. I do take meds everyday for anxiety, and i sometimes have to take xanax for the scan, but the thing that helped me the most, surprisingly, was that i finally tried closing my eyes inside the machine and i kept them closed. Also, the machine had a fan running in it and that really helped as my claustrophobia is worse when the air is still. I have even thought of bringing a bandana to tie around my eyes to keep me from peeking. I do that at night to sleep sometimes to make it darker for me. I know it sounds simple, but i couldn't believe how much it helped me, so i thought i would mention it.
Good luck!!!!
celia
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Celia,
I am too claustrophobic to even put something over my eyes without being drugged up! I tried it yesterday but it made it even worse. I learned the hard way with the first MRI not to open my eyes. That's when I lost it. But once I'm claustrophobic I don't even want the blanket on me, let alone something over my eyes.
I'm not sure if there's a difference between my claustrophobia and a panic attack, but I'm pretty sure the result is the same. I feel like such a wimp. But it is what it is and I guess I need the drugs to get through these scans.
I am getting the PET scan rescheduled for a different facility and they will give me a prescription for Xanax. I hope that will do it.
From now on, no more trying to be tough. It's drugs and a driver or not at all!
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my radiologist said most people are a bit claustrophobic and many are VERY. i had a COMPLETE meltdown on my MRI - i lasted 30 seconds. thought i could do it and tried but when they got me in the tube and i opened my eyes, that was the END of that. we did the ativan and a small mirror over my head so i could look out and see my feet, the tech put her hand on my leg and that helped too. i did manage to get through it
i had to turn over on my tummy for 30 min and that was hell. i went into shock and cried for several hours after the test. had to take more drugs and go to bed.
so you are definitely not alone in your claustrophobia and no dr or tech should make you feel badly as you CANT help it - they need to work with you to help you get through this
hugs
Barb -
Barb,
The techs have all been wonderful - very understanding. I know they see this a lot. I can't lay on my stomach at all - I feel like I can't breathe when on my stomach and don't even think about putting anything on me or putting me in a tube! YIKES!
It amazes me that some people can do these scans without any problem whatsoever. But then some people are afraid of needles and they don't bother me at all. So I guess I'm lucky there. I've seen a lot of needles in the past year.
Thanks for all your help. I know I'll get through this too.
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One other thing I'd like to add that complicated my PET scan is that when I drink a fluid, an almost equal amount needs to be expelled a short time later. My body must be continually at it's liquid maximum, or something. For the PET scane, you have to drink about a quart of the contrast liquid (that's another story in itself!). I did go to the bathroom just before they started the PET scan, but it wasn't enough. Within 15 minutes in the scanner, I had to go again...REALLY. They wanted me to hold it for another 15-20 minutes, but I knew it wasn't going to be possible, so they had to reset it and start again after I went.
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I have had 4 MRI's in the last three months and they have been difficult for me. It is the stress of the scan results combined with being enclosed. For me the only way to get through these is to not open my eyes at all. I keep them tightly closed even before I go in so I cannot see what is happening. I have not had a PET so cannot comment on that. I hope you can one in a room--the mobile one sounds very cramped with enough anxiety meds.
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{{{Pam}}} Sorry you are having such a problem with caust, and the MRI.
I just wanted to mention to help alleviate one fear you have that you mentioned about the 'tumor' mention in the MRI request. Most likely it's just b/c in order to bill your insurance, they need to put something of that sort down to make it a 'necessary' test. Otherwise, the ins would not or might not cover it. Hope this makes sense. It's just for insurance basically, b/c they might not think an MRI is necessary for a cysts. -
I completely understand how you feel about the MRI and PET. A couple of weeks ago, I had to have a breast MRI and PET on the same day. After years of making my husband promis to NEVER let me be put into an MRI, it was a shock to have to actually do this. The option for an open MRI wasn't mine because of my weight and I knew this was something that had to be done. It was hard enough when they put me into the MRI face down, and then put on the headphones but I came close to just losing it when the table started moving into the machine! I had to tell them to let me out, which they did but, after a lot of prayer, I went back into it. It was the longest "few minutes" of my life but it was eventually over and done. It may sound silly but one thing that helped was holding tightly to the end of the table by my fingertips since I was face down, it felt like a link to freedom.
The PET wasn't as bad because I took the medication to relax and the techs were great about letting me know how long each step would be and were pretty much on target. Getting my head out quickly really helped a great deal. Although I can't say the PET was easy, it was a lot less stressful than the MRI, mostly due to the meds and the staff.
Getting to have the Open MRI really is an incentive for me to lose weight since it's a given there will be lots of follow ups after all the treatments.
Right now, I have a portacath with metal so no one will put me into any of these machines until chemo is finished! Guess there's something good in everything.
Nothing anyone tells you will help, it is something you have to do if you want to find out what is going on and how you can be treated best. Ask for medications to help you get through it. Whatever helps.
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Pam,
I kind of figured that you were probably too claustrophobic to cover your eyes. Since what you experience is a lot like a panic attack, then DRUGS are the best answer!!!
I wish you the best of luck. You have a good sense of humor about it, and that is good!!!
hugs,
celia
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I totally understand your feelings about MRI's and other scans.
I've had both type MRI's and when in the closed MRI, I had tears rolling down my face and I'm usually so strong it's ridiculous but something about being closed in like that really did a number on me.
I will only go for "open" MRI's now.
They are so different.
The bone scan equipment is a piece of cake as is the big donut CT scanner.
Although the CT scanner is intimidating.
I prefer none of them but they are life savors thank goodness.
Get the meds as they will help you cope.
*
{{{{celia}}}} Thanks for your what you said elsewhere
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wishiwere -
I've thought a lot about that sticker that said tumor scan. I think you're right - it really is for insurance purposes and just identifies the type of scanning they're doing, not that there is a tumor. It sure threw me for a loop though.
A funny thing - while I was sitting on the table trying to calm myself down to do the PET scan I saw a small door near the floor that said emergency exit. I was seriously contemplating how fast I could get off the table and out that door!
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I just found out that the facility where they are sending me for my rescheduled PET scan has a virtual tour on the internet. I checked it out and it helps immensely to see what the place will be like. Not much difference in the scanner, but the office and uptake room (where you wait while the tracer is taken up) is much, much bigger than a semi trailer! It's really gonna help to not be claustrophobic before I even get to the scanner (not to mention the Xanax). Wish me luck!
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Pam,
you are really funny...loved that about the small emergency door!!! That sounds like something i would think also!!!! I know exactly what you mean about seeing the place first and that helps to calm you. I think with Xanax as your co-pilot you are going to do fine!!! Good luck!!!
hugs
celia
((((((sahalie))))))) I think i have figured out what you mean!!!
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Pam - OMG - I am exactly the same with the claustrophobia/scan issue. I never knew I had it until my first CT. I freaked! I literally scooted out from under the machine...the IV ripped out of my arm...it was a mess. My dh was with me...he freaked too! My Dr. prescribed Xanax for me, I re-scheduled it and NO PROBLEM! But...in addition to the Xanax...they put a towel over my eyes...that helped as well. It was the most horrific experience...other than being dx'd of course! Best wishes to you!
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Just came back from my Ct/Pet Scan. 2mg Ativan did the trick. I was calm and almost asleep. To distract myself I spent the time in the scanner praying for all the people I know dealing with illness and grief. A much better experience this time. I didn't need a towel over my face and I never even got a sense of being inside the scanner. Gonna go sleep it off.
Thanks, ladies!
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